Fed up with doctors - rant and advise please.

[jireson]

So I'm type 2, have been for some time. I'm on Metformin, empfaglifosin and humalin insulin twice a day.

The practice nurse apparently keeps having discussions with people about me but doesn't include me! I only know my latest 2 hba1c readings as I signed up for patient access.

I've recently been told they're happy even though my hba1c is 61. I'm not as I'm still getting too many highs and that isn't the recommended target.

So I have self funded a libre and miaomiao2 to get a better idea of my readings.

I've attached a graph of my most recent readings and as you can see it's not great. Nightscout graph is http://jireson.synology.me:32781/

I never see anyone but the nurse practitioner and get the opinion she just fobs me off...

Shes repeatedly told me she's talking to a retired gp for advise.

I was taken off exenatide and put on trulicity on maximal dose without the smaller start dose at the same time as empfaglifosin. I ended up suffering with Tachycardia. Due to starting both they didn't know what caused it (even though it's listed as a side effect for trulicity). So after months and months I'm back on empfaglifosin without trulicity. My medical record still has notes I had an adverse impact to empfaglifosin rather than trulicity though!

I have to guess at adjusting my insulin dose regularly to lower highs and not get lows (which I figure you shouldn't do on long acting insulin). Some days I have to inject up to 300units others 60 or less.

They still haven't put me back on the exenatide which did work and helped with my weight!

I'm reading that I should be seeing a specialist diabetic nurse, go and the diabetic team on a regular basis as a diabetic on insulin.

I'm up for anything, I'm wondering if I should perhaps be on a mixed insulin or a basal/ bolus regime

So do I ask to be referred to the specialist diabetic team based out of the hospital. Do I change doctors?

I'd love to get some thoughts please. Thank you.

 

[bulkbiker]

What are you eating?

 

[xfieldok]

Agree with bulkbiker. Read the link in my signature.

 

[Dr Snoddy]

Agree with bulkbiker and co. Sounds as though you may be on the traditional NHS approach to Type 2. Eat carbs, medicate, condition deteriorates, add in more medication, continue to eat carbs, condition worsens etc, etc, model of chronic progressive condition confirmed!!!

 

[Mbaker]

It is important that you have an understanding of why you are on insulin as a Type 2 and decide what you would like to achieve. It is possible to potential put Type 2 into remission or possibly just take oral tablets only with lifestyle choices. These are realistic hopes probably open to you.

Generally speaking a Type 2 makes enough insulin, but it may not be effective. Fixing the effectiveness is the key. The biggest contributor to you blood glucose numbers is what you are ingesting; other factors such as lack of sleep, stress (cortisol), drugs (e.g. steroids) can add to the glucose load also - but usually insulin resistance is a major obstacle that will need over coming.

I would suggest as advised you detail what you are eating and if there is anything else, such as other drugs or conditions you divulge this information. We cannot offer medical advice, but we can let you know what our experiences are, and it is safe to say the significant majoritty obtain excellent results which cannot be coincidental once some principles are adhered to.

 

[ert]

I agree with what has been said above. If can't process carbohydrates, because you're insulin resistant, you will over time have to take more and more medications to allow it. Doctors in the UK don't seem to want to advise patients what to eat, but a lot of people on this forum have had success in controlling their blood sugars with LCHF diets.

 

[EllieM]

You know, that graph would look a lot better if you could just reduce the highs in the evening....

While I agree with the others that lowering carbs could solve a lot of your problems and reduce or eliminate your need for insulin, just reducing the carbs in your evening meal might help a lot.

The problem with injecting insulin as a T2 is that high blood sugars plus high insulin levels result in fat gain, which causes increased insulin resistance, causing you to need more insulin ..... It's not a happy vicious circle.

And you can't really use basal insulin to fix local high levels of blood sugar, you're meant to keep it at a stable amount with just minor variations according to increased activity, illness etc. You need bolus insulin if you want to use insulin as a short blood sugar correction.

But if that's a picture of you as your avatar, you look way too young to be taking insulin as a T2. And while 61 isn't an awful hba1c, it's not great if you want to stay in reasonable condition for multiple decades in the future.

Your relationship with your GP sounds a little toxic, so by all means try asking for a hospital appointment. As a T1 I would never trust my GP to understand my insulin regime. But be aware that you may have to wait a long time for an appointment.

Good luck.

 

[Tophat1900]

Your dietary info would be a great starting place as everyone else has already stated. Many people can make improvements there. Also agree with @EllieM about seeking an appointment with a hospital clinic or whatever the set up is there. I did the same thing, but waited a few months for an appointment (pre-covid). It just seems you are getting no where near the appropriate care that you should be getting.

 

[Resurgam]

Having stopped all medication and still got back to normal numbers, I found my doctor and one of the nurses were really rather peeved about it - I have not seen the doctor for almost 4 years now and the nurse since she looked at my row of Hba1cs 42.
You might need to weigh up just how ticked off your HCPs deserve to be.

 

[TeddyTottie]

Shes repeatedly told me she's talking to a retired gp for advise.

Whaaat? She’s talking to a retired GP ie. not on the staff of your GP practice, and discussing your personal, private and confidential medical details with some random ex-doctor of dubious vintage?

I would be having strong words with the practice manager about patient confidentiality!

 

[ickihun]

So I'm type 2, have been for some time. I'm on Metformin, empfaglifosin and humalin insulin twice a day.

The practice nurse apparently keeps having discussions with people about me but doesn't include me! I only know my latest 2 hba1c readings as I signed up for patient access.

I've recently been told they're happy even though my hba1c is 61. I'm not as I'm still getting too many highs and that isn't the recommended target.

So I have self funded a libre and miaomiao2 to get a better idea of my readings.

I've attached a graph of my most recent readings and as you can see it's not great. Nightscout graph is http://jireson.synology.me:32781/

I never see anyone but the nurse practitioner and get the opinion she just fobs me off...

Shes repeatedly told me she's talking to a retired gp for advise.

I was taken off exenatide and put on trulicity on maximal dose without the smaller start dose at the same time as empfaglifosin. I ended up suffering with Tachycardia. Due to starting both they didn't know what caused it (even though it's listed as a side effect for trulicity). So after months and months I'm back on empfaglifosin without trulicity. My medical record still has notes I had an adverse impact to empfaglifosin rather than trulicity though!

I have to guess at adjusting my insulin dose regularly to lower highs and not get lows (which I figure you shouldn't do on long acting insulin). Some days I have to inject up to 300units others 60 or less.

They still haven't put me back on the exenatide which did work and helped with my weight!

I'm reading that I should be seeing a specialist diabetic nurse, go and the diabetic team on a regular basis as a diabetic on insulin.

I'm up for anything, I'm wondering if I should perhaps be on a mixed insulin or a basal/ bolus regime

So do I ask to be referred to the specialist diabetic team based out of the hospital. Do I change doctors?

I'd love to get some thoughts please. Thank you.
View attachment 44681

Well done in taking positive steps to improving your insulin therapy.

You definitely need to lose weight.
Only obese patients need so much insulin.

Does your tablets help you need less insulin?

I was where you are.
I've lost most of the nearly 300units of insulin. I now use 7units of triple strength basal insulin and 0-15 units of novarapid daily. I'm eating a high protein, low calorie diet. No to little veg but need multivitamins with minerals anyway use to my bariatric operation. I highly recommend it. It's saved my life! I was getting heavier and heavier unless I ate mouse amounts of food. I lost maximum 1lb a week on average.
I've shed approx 7-8st. It's made a huge difference but to date on more meds not less. Which I'm hoping will soon be different. I'm confidently moving forward with improving my diabetic status due to weight loss.